29 September 2009

In a world where your hopes and dreams are dashed, then an alternate reality and plans set in, it is always fantastic to get good news, no matter how small it is. Every leap, every step, is seen as a huge achievement and a new milestone met.

So, I was very excited with today's new development.

Liam had a follow up at Duke for his vision. For some reason, Liam's eyes work but his brain doesn't process everything he sees properly. Because vision for Liam can change over the next few years, and because he is always at risk for retinal detachment due to his eye laser surgery so early on in his life, he gets monitored at least every 6 months at Duke.

When we get there we get taken back into a room where they run lights across his field of vision to see if he will track them. Liam has been tracking from right to left and back for quite some time. But today was different. Not only did he track from right to left again; he did it fast and he did it with excitement. He kept up with her. He has never done that before now.

And....

He tracked for the first time up and down!!

I was so excited! And so very proud. He has never looked up for anything before; he prefers to look down or straight out. And then she turned the toy off. She brought it up and down in his sight again and he followed it. With no lights! This is such good news for him. It means he is processing even more of his vision now and he is wanting to see the things that interest him!

He has made a big jump in his tracking skills since his last appointment 4 months ago. The technician noticed it right away too and was thrilled to see that he had made this progress.

25 September 2009

After hearing all of the fear and hype over the swine flu, it has put the fear of God into most people these days. No one wants to get it. People are afraid. I've been worried. The CDC is saying how it is affecting little ones worse than the usual flu, especially the compromised kids. People are antsy, waiting to get the H1N1 vaccine when it finally becomes available and worried at the same time on whether they should considering it is so new.

But, this sucker is traveling quickly and spreading like wild fire. And guess who gets it?

Uh huh, Liam.

So what does the dreaded swine flu look like?

Well, for us, it's a baby who is happy as long as his fever is down.

It's a little boy who is smiley and playful and still eating just like normal.

This isn't the dreaded swine flu I was warned about. While it may be horrible for some, my immune compromised, lung damaged, GERD, CP, little boy is handling it like a champ!

We actually would have had no idea he had it.

Rylie was sick a bit last week, just feeling down and running a fever off and on. Nothing major except for being really tired, worn out almost.

This week, Liam was running a low grade fever for two days. Because he was feeling fine, I never checked it, I just could tell he had one. The third day into the fever he woke up with a 102 degree one and I treated it with Motrin. On day four, his entire mouth was covered in huge splotches of white. That was a new one. After 4 kids, I had never seen that. So, I took him in to see Dr. Kid. Dr Kid took one look at his mouth, said he had Thrush and then said let's check him for the flu.

The results came back positive, of course, and I was a bit shocked. She put him on Tamiflu to treat it. I asked her if it was the swine flu since Liam has already had his flu shot for the year. She said yes, that it was traveling quickly and he was 'highly contagious' but that luckily the flu was very mild.

19 September 2009

I have been hesitant to talk about the following blog post for numerous reasons.

Here in the blog world, we can post about our triumphs and heartaches, hopes and dreams, and struggles and desires. I try to be honest and forthcoming about the path we have been going down. And all the world gets to see it (well, the 22 who I have following us). Having people here, following along with my journey, Liam's journey, has been comforting and encouraging. Knowing that there are people out there who love us and pray for us can make all the difference in the world when we are having a down day. Or a down week. Or a down month. The words of encouragement I have received have literally turned my days around.

But opening ourselves up to the blogging world also brings in an undesirable aspect. I have seen it happen first hand, not to me, but to others whose blogs I have followed. Motives, intentions, and attitudes can be misinterpreted or even worse, subjected to scrutiny by people who may not know the full extent of the situation. While criticism can be helpful, giving you an opportunity to check yourself, it can also be hurtful and harmful.

Why am I talking about all this? Well, I'm glad you asked!

You see, we have been given a child that has special needs. Liam is amazing and while we love him unconditionally, we want to do everything we can to ensure he has what he needs to someday live a life that is independent, happy and healthy. He means too much to our family (those who are related by blood and those who are related by love) to not try to help him in any way possible.

The cost of raising one child born in 2007 (the year Liam was born) is approximately $340,000. That is a lot of money in itself. But what about a special needs child? A new report was just issued showing that the cost of raising a child with special needs is just a few dollars shy of $1,000,000. That's right. One million dollars.

What people with healthy children might not know is that insurance doesn't cover everything. In fact, our federal gov't insurance doesn't cover much at all.

For example, Liam gets physical therapy twice a week, occupational therapy twice a week, and a vision teacher twice a month. Just counting PT and OT, that comes out to 240 visits on average per year. Do you have any idea what my insurance pays for? They pay for a whopping 50 visits a year. That's it. 50. Luckily, we get early intervention services for Liam and I requested they not bill my insurance for it and that allows us to keep our measly 50 visits for outside help. I use these up weekly for Liam's additional OT. Once we have used them up, everything comes out of pocket. Therapy visits are well over a hundred dollars each. And we haven't even started him on his speech therapies yet! Let alone the additional CST we would like to be doing.

Liam has a special needs nutritionist that costs $100 just to talk to her for 30 minutes. There are doctor co-pays, medicines and tests, all with large co-pays.

Liam will need durable medical equipment (DME) that insurance only pays 80% of. While you might be thinking that is a great thing, and it is better than it could be, it still means that when we go to buy anything for Liam that is classified as DME, we will be spending several hundred dollars. A bath chair alone costs four to five hundred dollars. A bath chair! Let alone special adapted strollers, wheelchairs and seats that go into the thousands of dollars.

And then there is the therapies and treatments for Liam that has shown to be helpful for guys like him that insurance doesn't cover at all. Nothing. Not one dime. And unfortunately, I have not been able to get any help from the state of NC. Trust me when I say this. I have tried to no avail. I get turned away everywhere I go because we don't qualify for assistance.

Which brings me to the whole point of this post.

We have been told by several people including the nutritionist, therapists and fellow CP parents, that hyperbaric oxygen treatments (HBOT) can be very effective for CP. After doing a lot of research, Shawn and I have come to the conclusion that it definitely could be a very effective treatment for Liam. And we will never know unless we try it. The drawback? Well, HBOT is done as a set of 'dives'. It usually takes 30-40 dives before you notice any changes and each dive costs well over $100 each. If you are doing the math, that's over $4000 for a round of dives, let alone hotel, food and traveling expenses. Plus, we need to do at least two rounds of dives about 4-6 months apart plus additional dives at a relatively local place in the interim. We just don't have that kind of cash laying around here to be able to try these treatments for Liam.

So, I started doing a bunch more research trying to figure out how to go about doing these dives and not maxing out our only credit card. And that was hard pressed to do. These treatments are just so pricey. But, I did find a place! Grandparents of a boy born with CP were told to try HBOT for him and they saw wonderful results. So much so, that they made it their life mission to provide HBOT to parents at a very reduced cost. How much you ask? Well, they only charge you $2500 for a round of 40 dives. AND, they provide you with free housing, use of a quadricisor, and oxy-sound harmonics. It's an incredible deal.

After thinking and praying about it, we have decided to do it.

What was uncanny was that two different women I spoke with from two very different walks of life used the same reference for trying HBOT. They both said, "Chemotherapy doesn't work for everyone. But no one is telling cancer patients that they shouldn't try it." It was strange to hear these women make the same reference. It felt like a sign.

I have reserved a place for Liam in November and will be away from the rest of my family for over 3 weeks while he dives twice a day, every day, excluding Sundays.

Now here's where the 'opening yourself up to the world through the blog' comes in to play.

We are doing some fund raising for Lemmy! Just some small stuff. Miracle Mountain (the place where the dives will take place) actually helps provide you with the ability to raise money through lottery style tickets. You can have your friends and family scratch off a ticket and whatever is underneath is the amount you donate. What is great about it is that the largest amount is $3. That's it. There is no pressure. So it is very low key, not embarrassing to us or the donator and each card has the potential to bring in $100 (there are numerous circles to scratch off). As soon as I get some, I will post what they look like and if anyone is interested in helping us out with them, please let me know and I will get one to you.

In the meantime, if anyone is interested in helping Liam out, I have put a link in the top corner of the blog. I want to be able to keep track of the money that has been brought in for his treatments so you can all see when we have reached our goal. Any amount is welcome and appreciated more than saying these words in this blog could convey.

These are statistics based upon Liam's weight, gestational age, twin birth and lack of steroids before birth. Not very positive are they?

640 grams is equal to 1 lb 5 ounces. And of course, Liam was mechanically ventilated for 8 weeks before coming off the support and going straight to a cannula for added oxygenation.

If I had known these statistics, I would have fought to keep my little boys in longer. Or I would have seen if Liam could have been birthed and then Brady allowed longer time to develop. I wasn't given any options. Unfortunately, I'll never know, but I do know that there are options.

10 September 2009

I never fail to open up my blog and grin when I see that adorable little boy on my header. And oh how that little boy loves to smile himself.

He loves to have blankets cover him and the other day, he was half asleep when I put his blanket on and he still smiled his little grin for me. And he always smiles the moment you lay him down on his back. It never fails to illicit a big grin from him.

________________________

Well, with all the g-tube hogging posts, I haven't posted on how Liam is actually doing with everything else these days.

Here is a quick run down.

He is definitely getting a lot stronger. He is able to balance himself for a bit in his bumbo seat before falling over and when he wants to he will push hard with his feet to straighten himself up in the seat. He can also do sit ups when lying flat on the floor. He bends into a V shape! Maybe I should take a hint and work with him to get my abs in shape.

He is still rolling from back to tummy on my bed...but still not able to transition that to the floor yet.

He is able to put toys in his mouth without automatically gagging and he is chewing them. I had no idea he could bite so hard until I accidentally got my finger between his teeth when he decided to chomp down.

He still talks a lot and seems to be doing more of it lately. Still no consonant sounds, but he does think it is funny when we move his mouth to say mama and dada. I can't wait to hear him say it all by himself. What a day that will be!

He is now loving a new video called Brainy Baby Right Brain. I am sure before long he will have his favorite scenes memorized and will be preempting the show with his giggles like he does on his Einstein videos. He is just as interested in this one as he is his Baby Einstein, so I am hoping this will transition him into even more dvd's for his viewing pleasure.

This is just a quick run down. I'd love to be able to say Liam is holding his head up, but even though he is getting stronger, he still isn't there. Yet!

09 September 2009

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Fear anticipates the worst and not the best.

The what if's will drive you crazy.

Fear is stressful and accomplishes nothing.

What is accomplished by fearing the unknown?

------------------------------------------

After visiting with Dr. Gut about placing a gastronomy tube in Liam, I have had my fears taken away. Seeing the tube, what it does and how it will look, must have been what I needed to allay my fears.

Liam is doing better on his eating and drinking now that he is 1 1/2 months into the Erythromycin. He is now downing his 5 ounce bottles, willingly, in ten minutes. And his weight is almost to 21 lbs.

I posted a question to my CP support group on what they would do if they were in my shoes and gave them Liam's stats and current info. And most of them said they would continue to hold off as long as possible. No one who had the tube regretted it, but the consensus was that if we can keep him tube free and still gaining weight then we are a giant leap ahead in this feeding game.

After the talks with other moms and because Liam's eating has been doing so well, we are currently going to hold off on the g-tube.

It is not off the table, but we have shoved it to the other side, out of reach, for a little bit longer.

05 September 2009

doubt

to be uncertain about; consider questionable or unlikely; hesitate to believe

to distrust

Archaic. to fear; to be apprehensive about

-verb (used without object)

to be uncertain about something; be undecided in opinion or belief

I am not certain. Of that I am certain.

I was sure of the choice to get the g-tube, although regrettably so, and now I am not so sure.

I don't know whether we are making the right decision! I am questioning, at length, whether this is the wisest choice.

I am questioning if this is what God wants.

I am questioning if I should just try harder.

I am questioning if Liam needs it now.

I am questioning if Liam needs it at all.

In my fears and frustrations am I resorting to this surgery when the status quo isn't so bad? Is it the unknown I'm fearing? Is it the surgery?

How do we know we are making the right choice?

He is still eating.... And he's actually done well these last few days.

I am not alone in questioning. Or in my doubting. Everyone has occasional doubts. And sometimes, doubting is a good thing.

I think my doubts will continue to be a struggle for me. I want to be assured of this decision. I want to know without a doubt that we are choosing the right thing. I want to know how it all turns out and if I will have any regrets.

Will I regret not trying harder?

Will I regret not waiting longer.

Will I regret not being able to play with and rub his tummy like I do now.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.